Identifying the Steps Required to Effectively Implement Next-Generation Sequencing in Oncology at a National Level in Europe

Next-generation sequencing (NGS) may enable more focused and highly personalized cancer treatment, with the National Comprehensive Cancer Network and European Society for Medical Oncology guidelines now recommending NGS for daily clinical practice for several tumor types. However, NGS implementation, and therefore patient access, varies across Europe; a multi-stakeholder collaboration is needed to establish the conditions required to improve this discrepancy. In that regard, we set up European Alliance for Personalised Medicine (EAPM)-led expert panels during the first half of 2021, including key stakeholders from across 10 European countries covering medical, economic, patient, industry, and governmental expertise. We describe the outcomes of these panels in order to define and explore the necessary conditions for NGS implementation into routine clinical care to enable patient access, identify specific challenges in achieving them, and make short- and long-term recommendations. The main challenges identified relate to the demand for NGS tests (governance, clinical standardization, and awareness and education) and supply of tests (equitable reimbursement, infrastructure for conducting and validating tests, and testing access driven by evidence generation). Recommendations made to resolve each of these challenges should aid multi-stakeholder collaboration between national and European initiatives, to complement, support, and mutually reinforce efforts to improve patient care.

An exploratory assessment of the legislative framework for combating counterfeit medicines in South Africa

Background Substandard and Falsified (SF) medical products are a growing global concern. They harm the individual patient, the healthcare system and the economy. The World Health Organisation (WHO) has highlighted contributing factors globally: insufficient national medicine regulation, poor enforcement of existing legislation, weak stakeholder collaboration and the rise of novel viruses, such as the COVID-19. The study aimed to assess the legislative and policy framework and institutional relationships governing pharmaceuticals and anti-counterfeiting strategies. Methods The study was explorative and consisted of two phases. The first phase was between 2016 and 2017. It looked at document analysis (annual reports and press releases from 2011 to 2016) from government institutions involved in medicines regulation and law enforcement for SF seizure reports between 2004 and 2017. The second phase was between 2016 and 2018 through in-depth semi-structured interviews (seven in total) with selected stakeholders. Results First Phase—the data collected and reported by various departments was sporadic and did not always correlate for the same periods indicating, a lack of a central reporting system and stakeholder collaboration. In South Africa, counterfeiting of medicines mainly involves the smuggling of non-registered goods. The most common counterfeit items were painkillers, herbal teas, herbal ointments, while some were medical devices. Furthermore, Customs identified South Africa as a transhipment point for SF infiltration to neighbouring countries with less robust regulatory systems. Second phase—interview transcripts were analysed by thematic coding. These were identified as the adequacy of legislation, institutional capacity, enforcement and post-market surveillance, stakeholder collaboration and information sharing, and public education and awareness. Conclusion Document analysis and interviews indicate that South Africa already has a national drug policy and legislative framework consistent with international law. However, there is no specific pharmaceutical legislation addressing the counterfeiting of medicines. Law enforcement has also been complicated by poor stakeholder engagement and information sharing.

Leveraging Sub-national Collaboration and Influence for Improving Animal Health Surveillance and Response: A Stakeholder Mapping in Tanzania

Animal health surveillance plays a vital role in ensuring public health, animal welfare, and sustainable food production by monitoring disease trends, early detecting (new) hazards, facilitating disease control and infection, and providing data for risk analysis. Good stakeholder collaboration across the sector can lead to better communication, better science and decision-making and more effective surveillance and response. An understanding of relevant stakeholders, their interests and their power can facilitate such collaboration. While information on key stakeholders in animal health surveillance is available at the national level in Tanzania, it is missing at the subnational level. The study aimed to explore the existing stakeholders' collaborations and influences at the subnational level through stakeholder mapping and to determine potential leverage points for improving the national animal health surveillance system. A qualitative design was used, involving consultative workshops with government animal health practitioners in Sumbawanga, Sikonge and Kilombero districts of Tanzania from December 2020 to January 2021. Data were collected using an adapted USAID stakeholder collaboration mapping tool with the following steps: (i) Define the objective (ii) Identify all stakeholders (iii) Take stock of the current relationships (iv) Determine resource-based influence (v) Determine non-resource based influence and (vi) Review and revise the collaboration map. Forty-five stakeholders were identified in all three districts and grouped into four categories: private sector and non-government organizations (n = 16), government (n = 16), community (n = 9) and political leaders (n = 4). Animal health practitioners had a stronger relationship with community stakeholders as compared to other categories. The results also showed that most of the stakeholders have non-resource-based influence compared to resource-based influence. The private sector and non-government organizations have a relatively higher number of resource-based influential stakeholders, while political leaders have more non-resource-based influence. The mapping exercise demonstrated that the system could benefit from community mobilization and sensitization, resource mobilization and expanding the horizon of surveillance data sources. Some of the leverage points include integration of surveillance activities into animal health services, clear operational processes, constant engagement, coordination and incentivization of stakeholders. The diversity in the identified stakeholders across the districts suggests that collaborations are contextual and socially constructed.

Assessing Sustainability Governance and Its Dimensions

Sustainable performance is essential to stakeholders. Organizations have invested resources to attain competitive advantage, and finally, they get success. But organizations fail to achieve sustainable performance despite having substantial resources. Thus, scholars have realized the need for sustainability governance (SUGO) as an alternative solution to resolve these challenges. The need for this empirical study has arisen due to a lack of validated measurements. The objective of this study is to evaluate and validate the SUGO and its dimensions. To validate the suggested model, this study uses a mixed-method approach. Content analysis (Nvivo-11) describes dimensions in qualitative research, and it explains that all measurements and items are valid and reliable. In addition, partial least squares (PLS)-based structural equation modelling (SEM) (SmartPLS-3) is used to analyse the data collected in the quantitative survey. The results show that all hypotheses are statistically significant, and measurements reflect the SUGO. Furthermore, the results prove that SUGO is a second-order construct, containing four key dimensions: corporate sustainability, knowledge integration, stakeholder collaboration and performance incentive. Finally, the implications of outcomes are argued in the context of theory and practice and suggest further research direction.

Stakeholder-Driven Methods Can Enhance Care Delivery for Nursing Home Residents With Dementia

The ongoing COVID-19 pandemic has underscored the need to optimize care for one of the most affected sectors: older adults in nursing homes and more specifically highly vulnerable populations such as residents with dementia. Research developed in collaboration with stakeholders can optimize impact, relevance, and trustworthiness of study findings thereby informing advances in care. Yet, evidence on stakeholder driven research for enhancing dementia care is limited. This symposium will provide examples of stakeholder-driven research questions that were addressed with stakeholder engagement. First, we will present current evidence about the perspectives of caregivers, including those from communities of color. The second presentation will discuss the perspective of clinical training stakeholders responsible for supporting system-wide clinical program implementation and their experiences with early and later adopter nursing homes within the context of a clinical trial. The third presentation will address the perspective of policy makers and payers via the effect of state-mandated dementia training on resident outcomes. The fourth and final present the findings from a study that examined how nursing home stakeholders responded to a payor requirements for pharmacy services and the relationship between that response and patient outcomes. We will conclude the session with a discussion of stakeholder-engagement methods and recommendations for future nursing home research, which champions stakeholder collaboration.

Building a Research Roadmap for Caregiver Innovation: Findings from a Multi-Stakeholder Consultation and Evaluation

Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.

Hydrogen Station Location Planning via Geodesign in Connecticut: Comparing Optimization Models and Structured Stakeholder Collaboration

Geodesign is a participatory planning approach in which stakeholders use geographic information systems to develop and vet alternative design scenarios in a collaborative and iterative process. This study is based on a 2019 geodesign workshop in which 17 participants from industry, government, university, and non-profit sectors worked together to design an initial network of hydrogen refueling stations in the Hartford, Connecticut, metropolitan area. The workshop involved identifying relevant location factors, rapid prototyping of station network designs, and developing consensus on a final design. The geodesign platform, which was designed specifically for facility location problems, enables breakout groups to add or delete stations with a simple point-and-click operation, view and overlay different map layers, compute performance metrics, and compare their designs to those of other groups. By using these sources of information and their own expert local knowledge, participants recommended six locations for hydrogen refueling stations over two distinct phases of station installation. We quantitatively and qualitatively compared workshop recommendations to solutions of three optimal station location models that have been used to recommend station locations, which minimize travel times from stations to population and traffic or maximize trips that can be refueled on origin–destination routes. In a post-workshop survey, participants rated the workshop highly for facilitating mutual understanding and information sharing among stakeholders. To our knowledge, this workshop represents the first application of geodesign for hydrogen refueling station infrastructure planning.